Amelia Gordon

Amelia came into the world on 6th January 2020, her growth had begun to slow down at around 28 weeks, so with bi-weekly scans we kept a close eye on her, doctors took the decision deliver her at 34 weeks.

She did incredible when she was born, she weighed 3lb 11oz and spent 14 nights in the NICU at Broomfield Hospital.

I first begun to suspect something could be wrong when Amelia was around 10 months old, having had two children previously I knew about milestones and the average time to expect them occurring.

Amelia would never respond to her name, or any kind of noise or interaction to be honest, and there was none of the little babbling or cooing you would expect from a child of this age.  

My first thought was that she could be deaf, as she wasn’t responding to loud noises happening around her and never startled. 

However, a quick little test of playing Hey Duggee underneath a sofa cushion and we very quickly learnt that a) she could hear perfectly fine, and b) she was obsessed with the show!

We contacted the health visitor and GP with the concerns that Amelia wasn’t making any verbal noise, responding to her name and just didn’t seem to be developing much. To begin with I thought this could be down to her being slightly premature.

Fast forward to Amelia being 19 months old, and she still wasn’t standing, talking/babbling, responding to her name. 

She didn’t seem to have either the interest or the ability to play with toys, certainly didn’t engage in any kind of interaction with other children or adults and was just a pretty silent child.

Amelia’s sister has a malformation in her brain, so I may have been wary of things going wrong, but on 21st July 2021 I took her privately to see a doctor at Springfield Hospital, the same doctor that ‘heard’ when I had concerns for Lola.

At the hospital appointment the doctor was very frank and open with his thoughts that he believed Amelia could have a genetic disorder; on examination he believed some facial features, her muscle tone, and lack of development pointed towards the possibility.

Although you couldn’t interact with Amelia, play or talk with her, she would occasionally, on her own and without stimulation begin laughing uncontrollably, and this was a symptom of a condition called Angelman Syndrome. Amelia fitted the bill in every aspect! From the lack of development, inappropriate laughing, muscle tone, facial features.

On 26th August 2021, Amelia had her first of many seizures whilst I was home alone with her. 

I was a complete mess in all honesty, I rang for an ambulance and it seemed to take forever in those minutes we were alone, she remained completely still for the rest of the day and had no energy whatsoever, she was taken to hospital where she was monitored and discharged, I was told to bring her back if she during future seizures she stops breathing for over a minute. 

I thought I’d found the answer, as with Angelman Syndrome seizures can start around aged 2, so when her genetic test results came back as negative for the condition I was really shocked, and almost disappointed as I thought we’d found our answer.

On 1st September 2021, Amelia had an MRI where it was discovered she has reduced myelination, reduced brain volume and high flair signal changes in the centrum semiovale.

These results explained the developmental delay but there was still no answer as to what was happening, it was still believed by neurologists at Great Ormond Street that Amelia has an undiagnosed genetic disorder.

February 2022 myself, Lewis and Amelia had blood tests done to analyse Amelia for Chromosomal microarray (CMA).

Chromosomal microarray (CMA) is increasingly utilized for genetic testing of individuals with unexplained developmental delay/intellectual disability (DD/ID), autism spectrum disorders (ASD), or multiple congenital anomalies (MCA).

Now it is January 2023, Amelia is three years old and we still do not currently have those test results back, we are told they could take another few months.

Whist Amelia has developed physically and now has the ability to walk, mentally Amelia is still seems to be ‘stuck’ in the mindset of the average 10 month old, right back when I first begun to think there may be an issue.

Amelia has been diagnosed with;

• Global Development Delay 
• Social Communications Disorder
• Hypotonia
• Awaiting genetic testing results 

Like many other children with genetic disorders, Amelia doesn’t sleep well at night. She has been prescribed to take 6mg of Melatonin each night which 50/50 will help her fall asleep, but most nights she wakes up and is in complete distress and we have no idea why.

Amelia can spend up to 4 hours an evening screaming, we do our best to comfort her by offering milk, calming sensory videos, but most of the time it doesn’t work. Being unable to communicate with her is so difficult because we have no ability to find out what’s wrong to calm her. She dislikes physical touch so where with a neurotypical child you could comfort them with a hug and reassure them, that doesn’t work with Amelia. 

During these hours of distress Amelia now being a strong three year old thrashing around her cot has caused herself some serous injuries, she’s had multiple nosebleeds and bruises to the head where she will headbutt the rails and the sides.

This leads onto the greatest concern for Amelia, her lack of danger awareness. 

There has been occasions where she’s somehow figured out how to do something overnight;

• Unlock the front door and wandered out on her own
• Turned on the hobs on the oven 
• Turned the taps on in bathrooms and wandered off leaving them to overflow
• She will use items around the house to climb up to high places
• Climb feet first into the toilet (water fascination we guess!?)
• She will climb onto the kitchen surface and push off anything there, this can be from glasses, plates, small appliances like the toaster or kettle. 

The main concern at the moment is Amelia has learnt to climb out of her cot, this means she has absolutely no safety at night. She is able to climb over stair gates and with her lack of sleeping means there is so much time of the night that she can do some serious harm to herself if we’re not awake.

She needs 24/7 supervision whilst she is awake.

Taking it in turns sleeping outside her bedroom door is the only way we have managed to safeguard her so far.

We are fundraising to try and make Amelia’s life that little bit more manageable and enjoyable for her, and to try and give her the best support so she can grow and develop what skills she does have and has the ability to grow on, and most importantly help to keep her safe.

It has been estimated that the cost of raising a disabled child is three times as high of that of a child without any disabilities.

Just before new year, I called Essex Council and the Children & Family well being hub, I was completely broken and in tears begging them for some kind of support, that I was struggling to cope and feel like a complete failure as her mother.

Two weeks later I got a letter saying “there is no clear role in which they can support us”. 

How? How is there no role that social care can play in supporting a family with a disabled child. They have more knowledge on all of this than me, but apparently there is no help and like many other parents we’re just left to try and find the answers and cope alone.

Any money raised will go towards specific therapy tailored for Amelia, and equipment that Amelia needs, in particular a safety sleeper bed so she can sleep securely at night without the risk of being able to harm herself, and intense speech therapy sessions weekly to try and enable her to be able to communicate with us. 

On the NHS, she is entitled to six sessions of speech therapy in a 12 month period. That is one session every 8 weeks.

Amelia needs a consistent input if we have any hope of helping her develop, and turn her screeching into actual spoken words. If Amelia had the ability to even use single word sentences, we have a chance at making her life a lot more comfortable. 

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.